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My Family Doesn't Understand

Hi everyone,

I'm new to this website, and also new to this disease. I was diagnosed with SLE and RA in Dec 2011 after my doctor thought I had lyme disease for over a year. What has been the most frustrating part of this is that I feel like my family just thinks I'm complaining. I've caught some rolling eyes from my mother who thinks that I'm just being dramatic. Or my husband has said that I should just take some tylenol and suck it up, and it really can't be "that bad" which makes it the worst for me - the fact that he doesn't understand what I'm going through and isn't being as supportive about it. I'd expect my friends to not understand as much, because I'm 24 and my friends are all in their 20s too, and we're all young, active, in good shape, and have been healthy our whole lives with no ailments or problems....but it's the most frustrating when my own family doesn't understand it or seem to take me seriously. I didn't want to believe it and I wanted to just be able to "suck it up" and deny that these symptoms were actually there, actually real, and actually painful. But I've realized that I can't. I have vented to my husband, my mother and father, and my siblings so many times, but they all seem to think that's not that bad. But the reality is...it IS bad, and it has been life-altering... I can't do all the same activities that I used to and when I wake up in the morning, my entire body is in pain to the point where sometimes i can't even get up. I'm feeling like everything is spiraling out of control particularly since my husband is not being as supportive as I hoped he would be and it has made us fight a lot more. I came to this website because I wanted to learn about what others are going through. I'm not crazy, right? This is for real, right? This isn't all in my head. The pain, the rashes, the tension, the fatigue, all of it is very real and this site has helped me find others who know that it's real too. So, WeHaveLupus.com, thank you for being here to help me come to grips with this and feel reassured.

YOU ARE NOT ALONE!!!! I am going through the exact samething. Just yesterday my boyfriend got upset with me because I wouldn't get up and cook after I repeated stated my whole bodyaches and my knees were swollen. Everyone always says I complain to much and "Girl somethings always wrong with you" Most people (family and friends) don't take my condition very seriously. My mom and grandma are in denial and keep telling me I don't have lupus because my liver and kidney aren't failing. The only thing I can suggest is to try to find pamplets or printouts from webmd that explains the condition and symptoms maybe this will work. It helped for one or two of my close friends but not everyone I really wish I had more answers because like I said I'm experiencing the same thing

i'm in the same boat as you!! my husband isn't supportive very much. he's just says" you never feel good"! or just plain wont help in the house etc.. i just try to explain how i'm feeling the best i can. maybe take him to a doctor appointment with you?? my other family is pretty supportive, but sometimes too much..if thats possible?? calling multiple times a day.. asking how i'm feeling.. it's nice they care. but i'm sure they get sick of hearing my complaints.. i'm sorry you're felling so alone..hugs..

Im sorry your family isn't being supportive in this, I was lucky that mine believed my pain and illness except my sister on her bad days. Im 20 so were close in age here and you will find there is a lot of people here with a story similar to yours. Feel free to vent all you want on here, we all understand that you just need to let it out when you can't with the people close to you. This disease is still pretty new to you and your family so in they're minds they are probably still seeing you as your old self. It is easier for you to see how this is all life altering because you feel the pain and fatigue but they dont. There will be a time when they will see it too, I hope, go on youtube and show them "the spoon theory" great explanation of this disease.

I know this is going to sound bad so please to don't hate me but what im about to say is just an example that people could relate.
So one time when someone, I think it was high school when this happened, said the typical "well your always sick" comment I said something that shocked them a bit. I told them that the hardest part of lupus is because your can't see it and sometimes I just wish I had something like cancer. Now not saying cancer is easier than lupus so just keep with me here. So I continued with my statement and said with something like cancer people just understand your sick and don't doubt your claim because you can see it and have the knowledge of exactly what cancer is. In the same conversation I still used cancer as an example and told them that even how horrible cancer is they have something we lupus people don't, hope, they have a hope and faith of getting cured and moving on with cancer just being a distant memory. Now us lupus people are able to suppress our symptoms but were always going to be in this endless cycle of being sick, in pain, and fatigue through our lives. It all becomes tiring and wears us down sometimes with no hope of a different future we just live with it.
Okay sorry if I offended anybody it was just an example and I wasn't trying to down play cancer. Yea anyway that was a bit depressing so I will end this here. I hope your family starts to support you soon.

Hi Mica,
I can see what you're getting at with the cancer comparison. Since everyone is so familiar with what cancer "looks like" and everyone understands how severe and life-threatening cancer can be, it almost seems like by having cancer, you'll have more sympathy and understanding from your family, friends, and peers. A person at my office has left for medical leave because he was diagnosed with cancer and everyone in the office sent him get well cards and they are holding onto his job until he comes back (at least they said they will hold onto it for 3 months). I was diagnosed in December 2011 and even before my diagnosis, I was taking lots of time off for sick days because I just was feeling miserable. When I got my diagnosis, I told my bosses about it so that they would hopefully be more understanding of why I would be asking for time off. But then last week, I had to take a sick day and my boss said "wow you're taking a lot of time off lately" and was giving me kind of an attitude about it. It was so frustrating because instead of a get well wish or anything remotely understanding, they just look at you like you're lazy, dramatic, or a crazy hypochondriac.

Hi Mica,
I can see what you're getting at with the cancer comparison. Since everyone is so familiar with what cancer "looks like" and everyone understands how severe and life-threatening cancer can be, it almost seems like by having cancer, you'll have more sympathy and understanding from your family, friends, and peers. A person at my office has left for medical leave because he was diagnosed with cancer and everyone in the office sent him get well cards and they are holding onto his job until he comes back (at least they said they will hold onto it for 3 months). I was diagnosed in December 2011 and even before my diagnosis, I was taking lots of time off for sick days because I just was feeling miserable. When I got my diagnosis, I told my bosses about it so that they would hopefully be more understanding of why I would be asking for time off. But then last week, I had to take a sick day and my boss said "wow you're taking a lot of time off lately" and was giving me kind of an attitude about it. It was so frustrating because instead of a get well wish or anything remotely understanding, they just look at you like you're lazy, dramatic, or a crazy hypochondriac.

It's because nobody knows what Lupus is or what it does. And most people don't want to know, because they have their own "problems". I had a coworker tell me, "i know what you mean, i have allergies and some days, i sneeze 10-20 times".
I just said, " oh wow, I feel so bad for you". REALLY? Sneezing 10-20 times a day must be so painful.
I had left a Handbook about Lupus on the table at work, so people can read it and understand better, but nobody read it. I know that because I have asked everybody, what they thought about it and everyone said that they havn't read it. I only have 9 co-workers. So much for caring.
After I was put on MTX and people asked me why I had to be off the day after MTX, I told them, that it was chemo, they know that it must be serious.
I have a very understanding husband and family, the rest of the world is not important to me. I couldn't care less about what they think.
I think, your family will come around, it takes time to actually get it.

Debbie

I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).